Saturday, April 13, 2013

Gavin has been a mystery to everyone but God his entire life. He has consistently baffled doctors... geneticists... and defied many of the odds that were routinely stacked against him.

So it shouldn't surprise us that Gavin's final moments are also a mystery. Last night he had the second of the two brain death examinations that they need to do to officially declare him "Brain Dead." The first was a physical exam and it was positive for brain death. The second was something called a perfusion study which measures blood flow to the brain. The radiologist saw minimal blood flow to his brain - which means they couldn't call a time of death.

We were all shocked. Our mystery boy... at it again.

Make no mistake - Gavin is gone, for all intents and purposes. He's not in his body - we can tell. The doctors assure us that he has profound brain damage with no chance of recovery. The "minimal blood flow" is not a hopeful sign by any means.

If you're heart just dropped and you are thinking, "Crap! I wrote to her and said I was sorry he died!" or "Oh no - I wrote on Facebook that he was now an angel!" It's okay. It's fine. The Gavin we know physically is not here. He's on his way to Heaven... but just not technically there yet.

So, we wait. We are patient. We love the extra time with our sweet child's body and we know he is not in pain. We are sure he is not scared. And we are positive he knows that we love him and will be okay when the moment comes that he decides to finally go. We reassure him all day and night.

Last night Gavin and I slept together in his bed. They had a warming blanket on his body because his extremities were ice cold due to poor blood flow. The blanket helped him a lot - and it helped me, too. The nurse put a lullaby station on the TV and as I snuggled with my sweet boy, his little life played like a movie in my mind. It is obviously easy - with only five and a half years with him - to remember every detail. I can almost feel his infant body on my chest as we paced in his nursery or rocked in his chair.

Laying next to him and holding his hand through the night made me so, so happy. Then I heard it. Our special song came on the station. A song that I sang to Gavin every night and whose words mean so much, they always have... but more now than ever. Listen...

never thought that in a million years

never thought that you would come to me

you're the answers to a million prayers.

you're the apple of my eye.

i can hear you breathing next to me.

just how lucky can one person be?

i am looking at a mystery

everything i dream, more than i can wish for.

starlight starbright, all day all night

i will be right next to you.

here forever, i will never leave, i will never leave.

baby you're my little ray of light

i could find you in the darkest nights

if you cry then i will hold you tight

never letting go, i would do that for you.

starlight starbright, all day all night

i will be right next to you.

here forever, i will never leave, i will never leave.

baby i am here

baby i am here

starlight starbright, all day all night

i will be right next to you.

here forever, i will never leave, i will never leave.

I sang along in his ear and then released so much grief onto his pillow. This is so, so hard. Unbearable. Unfair. We have been robbed. I'm angry. I'm devastated. I'm scared.

His organs are still being preserved with the medications he is on, but his kidneys, unfortunately, seem to be slowing down. They've given him lasix, but it's not helping - and he has developed edema everywhere. His sweet little hands look like they may burst because they are so tight with fluid. Even parts of his inner eye are swelling. It's heart wrenching to see.

Donating Gavin's organs is so important to us - and we know it's a way of honoring Gavin's legacy. If you didn't know him or realize how he touched people lives, just look at the outpouring of comments and Facebook posts and blog posts about him. People have been inspired by him over the years - and continue to be inspired by him now - and I know in my heart that, even in his death, that won't change. Knowing that he can save lives with his organs means the world to us and brings us a great deal of comfort. And I'm grateful for the mail I've received (that I've been able to read so far - I'm drowning in mail and comments and more) from families that have someone they love on the list waiting for an organ. Or people who have received organs. They all want to thank us for even wanting to donate our child's organs. And they tell us that just the fact that we made the decision brings hope to them that one day, their child's life might be saved.

So, we wait. We know that Gavin will tell us when he's ready and we will respect that. Tomorrow is my birthday. I will be 43. People seem so worried about this happening on my birthday. But I will tell you, releasing Gavin from his body... and knowing he is free... would be the greatest birthday gift I could receive.

All his life I searched for answers. I was determined to heal him, "fix him," make things better for him.

It might not be happening the way I expected... but I guess one could say he will soon be healed.

Thank you, from the bottom of our hearts, for loving our family during this awful time.

p.s. We obviously can't make any plans until we have closure here at the hospital for those of you wondering about funeral arrangements. We are hoping to have the funeral at Epiphany of Our Lord Church in Plymouth Meeting, but that's not certain yet. This is the church where Ed and I were married and both boys were baptized. And we are working on an "in lieu of flowers" project that would be meaningful to Gavin and our family. Stay tuned...

61 comments:

I am grateful you are finding comfort in the outpouring of social media love, thoughts and prayers. And I am glad you got to spend more special time with Gavin. Thinking of you EVERY minute. I can't wait to give you a hug.

Thank you for taking the time to update. I am in awe that you can in the midst of this, but trust that it is God's hand on you. I have been checking frequently today for updates, and praying for you and your family. Again, thank you for letting us come on this journey with you. God bless.

I have watched a friend take a life with unbelievable challenges and hardships and make a beautiful life with a beautiful family. I'm pretty sure I know where Gavin got his superhero strength. You guys are constantly in our thoughts.

I am so glad you can find moments of joy in the midst of incomparable loss. This kind of death is so very difficult; slow and unmapped, like when you fought to bring Darcy into the world on her terms. May the prayers and support of people who love you and Gavin carry you through the storm, granting you peace and healing as you cherish all Gavin has brought to this world...

Haven't stopped thinking about you and praying for you. You are such an amazing mom. I've been captured by your story and constantly checking for updates. You have touched my heart so I've been in tears for your pain the last few days and in awe of your courage. Much love to all of you.

There is a book called On the Night You Were Born by Nancy Tillman. I bought it for my son who turns one on Monday. We were blessed with both of our children through adoption. This book takes on a whole new meaning when I read it through your eyes. I am going to post it on here even though it is long. It is so meaningful and I hope you think so too :)

On the night you were born, the moon smiled with such wonderthat the stars peeked in to see youand the night wind whispered,"Life will never be the same."

Because there had never been anyone like you...ever in the world.

So enchanted with you were the wind and the rainthat they whispered the sound of your wonderful name.The sound of your name is a magical one. Let's say it out loud before we go on......Gavin <3

It sailed through the farmlandhigh on the breeze...Over the ocean...And through the trees...

Until everyone heard it and everyone knewof the one and only ever you.

Not once had there been such eyes,such a nose,such silly, wiggly, wonderful toes.

When the polar bears heard,they danced until dawn.

From faraway places,the geese flew home.

The moon stayed up until morning next day.

And none of the ladybugs flew away.

So whenever you doubt just how special you areand you wonder who loves you, how much and how far,listen for geese honking high in the sky.They're singing a song to remember you by.

Or notice the bears asleep at the zoo.It's because they've been dancing all night for you!

Or drift off to sleep to the sound of the wind.Listen closely.....it's whispering your name again!

If the moon stays up until morning one day,or a ladybug lands and decides to stay,or a little bird sits at your window awhile,it's because they're hoping to see you smile...

For never before in story or rhymenot even once upon a timehas the world ever known a you, my friend,and it never will, not ever again...

Heaven blew every trumpetand played every hornon the wonderful, marvelousnight you were born.

Gavin is at peace. Maybe He is waiting for the right person to be ready to get his organ(s). He is a thoughtful lil superhero :) Who knows why he is still hanging on, but he is and only God knows why. My family continues to pray for your family. Maybe one day you will make Gavins CB page and this blog into a book, I know millions have been touched by Gavin and would buy the book. I believe Gavin will continue to encourage people for many many years. He will be remembered.

You are an amazing mother. I also know the grief and anger that comes with taking your child off life support. My first child had emergency surgery when she was two days old. She hemoraged during surgery and we had to take her off life support. To have to bury your child is not something a mother should have to go through. You have incredible strength and Gavin is a lucky boy to have you as his mother. Brian will have wonderful memories of his brother by the way you honor him. I hope you and your husband find strength from each other. I wouldn’t have made it through without my husband!

I am so humbled by your grace Kate, by your selflessness during this excruciatingly difficult time. We could all stand to learn from you and your sweet boy Gavin. Your beautiful family continues to be in our collective hearts and prayers. You have welcomed us with open arms to grieve with you and so we stand by silently, ready to offer up our tears, our hugs, our love; for you, for Gavin, for Ed, for Brian. Your family has become our family, and as you continue on this painful journey, we are honored to walk alongside you, in whatever capacity we can. Gavin's life has touched so many, and your courage and transparency this last week reminds us all that love transcends even the darkest moments in our lives. May God continue to provide you the strength and guidance you all need in the days, weeks, months, and years to come. Much love. Jo.

I am so sorry. I know a little of what it's like to watch a child die - my daughter Evie only lived for four hours and I watched her breaths slow until there were no more. I understand the peace of releasing them from their body, as you said. But I also know the pain - the heart-wrenching gut sobs of a mommy's loss - I am so, so sorry. I will be praying for you <3

My heart is breaking for all of you. I continue to pray for you, for Ed, for Brian, and for your family, that you will find peace and comfort with the Lord during this terrible time. I know Gavin is safe with Him already. God Bless you all.

I feel like I know Gavin...through Sara! I work with Sara's mom and have so enjoyed the stories and pictures that she has shared. Sara is a very special young lady, but you already know that. I can only hope that Gavin will always feel Sara's love. God bless all of you.

I am so in awe of your strength. I feel like your words and your hope are keeping the whole world of people who are learning your story together. Sending you continued strength and love to your family.

Oh I just don't have any words for some one as amazing and graceful as you kate. I would love to give you a hug and say I am so so sorry and even though I have only just "met" you all, gavin has touched me and changed me and thank you so much for that.

I am so sorry for your pain. Much love to you and your family and everyone who new your beautiful son! May God be with you, and I know He is. With every bit of my heart I know God is there and He looks out for us and He takes care of the ones we loose because He loves us even more than we can ever love each other and the babies He takes back to Him are in perfect peace.Lots of love!

Kate, I am trying to think of what you called it that you do to show the boys how much you love them when you were entered in the contest a while back. All I can remember is 'LOVE'. I know it was something like love bombing but I am at a loss for the title. I just wanted to say that in this heartbreaking time,you are still doing that with Gavin. What you did by singing lullabies and cuddling and holding his hand under that warm blanket last night shows us that. I think you are being incredible strong to even be able to update FB, but I am so very glad you are, I have been checking so often to find out about sweet Gavin. Please know we are praying for this to be as peaceful a passing as can be possible. My heart is breaking, I can onky imagine how you and Ed feel. I hope you feel the love in our many words we are sending here and they give you comfort. I love your family from afar and am keeping you all so close in prayer. God Bless you sweet Gavin.

I happened upon your site tonight and have been reading (and crying) for 2 hours now. You are absolutely amazing and your story has truly touched my heart. I am so sorry for your loss but so happy for Gavin that he was able to spend his time here on Earth with such an incredible family. You will all be in my thoughts. Thank you for sharing. All my love.

I saw your site on ivf connections and came here to read your story. I am praying for you and your family. I am so sorry that you have had to go through this and I am in awe of your amazing strength to share his life with all of us and also with others in need of an organ donation. God bless you.

Thank you for the update. We have prayed for and thought of Gavin all day. We hiked through the mountains today and it felt like we were a little closer to heaven...I little closer to Gavin, a little closer to God. Gavin has given me the chance to teach my children more about compassion, organ donation, death and heaven. We've had many great heart to hearts since yesterday. My son said that he even dreamed that he asked the Lord to let him be the one to die and let Gavin live. Holy cow. I let them see pictures of your sweet gavin and I let them see me cry but I also let them see me raise my hands toward heaven and thank our Lord for Gavin's life here on earth and praise God for his new and perfect body. Hallelujah and praise God for one day you will all be back together. Godspeed Gavin!

I met you for the first time the other day when Gavin was transported to the PICU at Dupont. Your attention to detail and having a sense that something just wasn't right is a testament to how well you know your children. Your deep concern, knowledge of Gavins' history and the sharing of how he was known for many miracles. Tonight I happen to accept a friend invite on Facebook and I see a link to your blog. I knew instantly that the picture posted was the one I saw on your iPad the other night. We worked so hard and were so hopeful that help was there for Gavin when he needed it. The positive energy from your family, friends and the lighting of candles in your neighborhood- oh, how I was hoping that Gavin would be his old self. Your ability to think of others, considering organ donation is a testament to your unselfish ways. Continue to do anything that brings comfort, joy and good memories in this final journey with Gavin to you and your dear family. Until we meet again be assured of my thoughts, prayers and love. Patty / SWAT RN

I came to your blog through a friend. I started reading it last night. I cried and cried as I read. I have 3 healthy children and cannot even begin to imagine what you have gone and are going through. My thoughts and prayers are with you and your family during this most difficult time. My heart breaks for you </3

I have been reading your beautiful words for a year or so now and I am heartbroken for you and your sweet boy Gavin. Know that there are people on their knees this night praying him into heaven. May God bless you and your courageous family. God is with you...Blessed be the Name of the Lord.

Hi: I came over through Mary at Passionate Perseverance. I just wanted to say I'm sorry and I am weeping with you, but also joyful that Gavin is sitting on the knee of our sweet Savior, laughing, whole and healed. Hallelujah! Rejoice for the Lord is good! ((((Hugs))))

Kate and Ed -- I've been thinking of your beautiful boy all day today, shedding tears for a child I will unfortunately never meet, but I feel as though I have through your loving words and dedication to him, and his amazing nature just shines through all of the hardships he has endured. Much love to your whole family. - Erica

I happened tobe scrolling my fb page and stopped to read one of your posts.....that was more than an hour and 1000's of tears ago....my heart goes out to you and family. Gavin goes this night with his own light show...his life being celebrated by the Northern Lights being visible giving Gavin a lighted path home... You and your family are an inspiration....shed tears of sorrow for your loss... Share smiles for the happiness Gavin brought......extra love and hugs for Brian.

I just cried through all 16 minutes of Gavin's first year video. I'm so sorry about what your family is going through right now with the loss of your beautiful, precious little boy. I can't even imagine.

I put a prayer request in for Gavin at my church this morning. My daughter Rana who has spina bifida and I have been praying. After reading this most recent post Rana who is 10 said, "He's waiting for the right rainbow to take him to Cielo"(heaven but being Cuban-Americans we use the spainish word). I thought that thought may brighten your day. Sending prayers from Florida.

Oh Kate I know what you are going through. I lost my sweet boy last year to cancer. We were able to donate his organs. Many hugs from my family to yours. My son has this message for Brian(he's 7 and last year lost his 2 year old brother)"Brian,its okay to be sad but your brother is happy, he does not hurt anymore. He wants you to be happy for him."

Kate - I've been reading your blog almost daily for at least a year and haven't read the last few days and just tuned in to discover this . . . my heart is breaking for you. Tears. Please take comfort in knowing that you have loved Gavin completely and fully and have been the best possible mother to him. Your love helped him surpass doctors predictions and because of that we can all cherish memories of him recently walking among all of his other accomplishments. I'm in shock. Sending you love at this very sad time.

you are so very brave, I know that it has to mean so much to him that you held him so close until he was ready, I know he had to have felt so loved by you all the days of his life, I dont know you but I can feel your love for him. Im a nurse of 18 years and to have gotten a chance to take care of him, I know that there are so many mourning with you. A few weeks ago I read the book "heaven is for real", It was a comfort for me. I hope that if you havent read it you get a chance to. I sit here with a face full of tears I wish I had gotten a chance to meet him, its obvious that he was an awesome little boy. You have shared him with us in a way that truly showed how beautiful he is. You are a beautiful mom.

My heart breaks for you and your family. I don't know you but in just a few posts I've read I can tell what courage, bravery, and love you exude. It's inspiring and even hopeful. I will be thinking about your angel. He is the same age as my son. You really are an amazingly inspiring mom. Thank you.

my mom told me tonight how she hopes you have super fantastic friends to get you through this time of grief. she told me to have little brother over for a play day. oh how I wish we could but South Dakota is a tad far away :( oh this technology!!! I have followed your blog trials and triumphs for a couple years now and please know we are thinking of and praying for you!!!

I just wanted to say that Gavin's last journey has really touched my heart. I also wanted to say thanks for posting the link to Starlight, Starbright. I will always think of your family when I hear it.

I came across your blog through Facebook. My heart is aching for you and your family. I am amazed at the courage and generosity you are displaying during this difficult time. God bless you and know that Gavin will always look down from heaven and smile upon you. Thanks for sharing your story, my thoughts and prayers are with you and your family.

From a mom who has been in your exact shoes...take it all in. There is no easy "answer", no easy advice, no words to take it all away, except "take it all in". These moments will become incredibly precious memories. Praying for you, even though you don't know me.Geraldinewww.caringbridge.org/visit/connorv

Thank you so much for sharing your story. I am so sorry that you don't get to spend more time with precious Gavin - 5-1/2 years just is not enough. He is playing with the angels now. I commend you for donating his organs I believe that is the ultimate gift. May the Lord watch over you and your family as you make the transition that is now to a different life, a life with an angel child. God Bless you!

I was reading your sorry about Darcy and you noted that you were pregnant 5.5 month, 5.5 days for delivery and 5.5 his u held her. I thought it was interesting that gain was 5.5 years old, sticking to the 5.5 number. I pray for your whole family. You have given Brian good memories of his forever brother.

Kate, I have been reading your blog for over a year and in that time your writing has been such a comfort to me. As a mother of a special needs child myself I've found so much helpful advice and encouragement here. I hope that the comments here, prayers, good thoughts, etc that we've all sent to you and your dear family continue to be felt and offers you some of the same comfort you've given all of your readers over the years.

Hi Kate!I just read your entire blog; tears streaming down my cheecks! I saw your facebook site via a friend and I couldn't help but read the entire thing. I am so sorry for your loss, but I am so impressed and completely inspired by your amazing attitude and outlook on life. Everytime I go to the shore now, I will think of your wonderful heart:) I grew up in Norristown, but now live in CA:) God Bless you and your family:)

Who I Am...

Hi! I'm Kate. I'm a positive thinker, an amateur blogger, a jokester, and a reality TV junkie. I'm also very lucky to be a stay at home Mom to Gavin and Brian. I have a husband that has a big laugh, a big heart and a big talent for cooking. (Thank God) Our life is not always easy, but it turns out it's more than I ever dreamed it would be. I write about Gavin's disability, his miraculous progress, Brian's successful recovery from a peanut allergy and a speech delay, my Rheumatoid Arthritis and infertility journey and our crazy, incredible, roller coaster of a life. I also remember and honor our daughter, Darcy, who we met after 5 1/2 months of my pregnancy.

I feel honored that you're here to get to know us.

Want to know more? Click on each link under the pictures at the top of the page to read our stories...

Thank you for visiting and caring about our family!

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Gavin's Playground Project

Gavin's Playground Project was born from my desire to see an "All Abilities" playground built at Nemours/A.I. duPont Hospital for Children in Wilmington, Delaware. This is the hospital where Gavin spent a lot of time during his life... and where he ultimately died, surrounded by friendly and familiar faces. To mark the one year anniversary of his death, I held a fundraiser on April 5, 2014. You can read all about it in THIS post.

We raised a LOT of money, but not enough for a playground! If you would like to contribute to help make this playground a reality - so no kids will ever have to sit on the sidelines watching their peers play - you can contribute directly to the hospital through the Chasing Rainbows fundraising page HERE. Your donation will go directly to the hospital for the playground and is tax deductible. You can also create your own fundraising team page and start collecting donations in honor of anyone you want!! There is also a mailing address on their page if you prefer to mail a check. Designate your contribution in memory of Gavin Leong - or write in that this is for the playground so your dollars will go to the right place. Thank you for your support of Gavin's Playground Project!

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Gavin's Trust Project

I created "Gavin's Trust Project" to help support Gavin's friends who receive services from the Chester County Intermediate Unit in Pennsylvania. I wanted to continue to try to "make the impossible... possible" for kids like Gavin, knowing well how hard it can be to get much needed "special needs" items. It makes me happy to know that even after his death, Gavin continues to help others. Click HERE to learn more about the Trust Project! All of your donations, big and small, will be added to Gavin's Trust Project to help therapists and teachers get what they need for children in this program. You can write a check made out to CCIU and mail it to: Chester County Intermediate Unit, c/o Deb Hiller, 455 Boot Rd., Downingtown, PA 19335. Please be sure to add "Gavin's Trust Project" in the memo. Thank you on behalf of me and my little superhero!